ARVD - Genetic Study of Arrhythmogenic Right Ventricular Dysplasia ARCHIVE

Head :
Charron Philippe, Centre de référence, CHU Pitié-Salpêtrière, Paris

Last update : 01/01/2018 | Version : 1 | ID : 60193

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name Genetic Study of Arrhythmogenic Right Ventricular Dysplasia
Sign or acronym ARVD
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation Accord CNIL, accord CPP
General Aspects
Medical area Cardiology
Health determinants Genetic
Others (details) Right ventricular dysplasia
Keywords unscheduled hospitalisation, dysplasia, cardiomyopathy, Health episodes, death
Scientific investigator(s) (Contact)
Name of the director Charron
Surname Philippe
Email philippe.charron@psl.aphp.fr
Unit Centre de référence, CHU Pitié-Salpêtrière, Paris
Organization Assistance Publique - Hôpitaux de
Collaborations
Funding
Funding status Public
Details Programme hospitalier de recherche clinique
Governance of the database
Sponsor(s) or organisation(s) responsible Assistance Publique - Hôpitaux de Paris
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Cohort study
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Diagnosis was established according to international standards including results from bi-ventricular contrast angiography scan or cardiac MRI.
Database objective
Main objective General objective: The aim of this project is to investigate the genetic and phenotypic aspects of the disease and determine the role of genetic testing in clinical practice: diagnostic and prognostic value. Secondary objective.
Inclusion criteria All patients with ARVD regardless of age and family background. All first degree relations over 10 years old are included.
Population type
Age Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Adulthood (19 to 24 years)
Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Elderly (65 to 79 years)
Great age (80 years and more)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Pitié Salpétrière
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2002
Date of last collection (YYYY or MM/YYYY) 2008
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 350 (128 familles/families)
Data
Database activity Data collection completed
Type of data collected Clinical data
Declarative data
Paraclinical data
Clinical data (detail) Direct physical measures
Declarative data (detail) Face to face interview
Paraclinical data (detail) Bi-ventricular angiography scan with contrast, ECG, echocardiography, ECG-HA, Holter-ECG, stress test, cardiac MRI.
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Others
Other (detail) Etiology/genetics Mortality only with no Health episodes
Procedures
Data collection method --------------------------
Participant monitoring Yes
Details on monitoring of participants Average follow-up: 36 months
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://europace.oxfordjournals.org/content/11/3/379.long
Link to the document http://europace.oxfordjournals.org/content/12/6/861.long
Link to the document http://heart.bmj.com/content/97/10/844.full.pdf+html
Link to the document http://www.internationaljournalofcardiology.com/article/S0167-5273%2812%2900859-5/fulltext
Link to the document http://europace.oxfordjournals.org/content/early/2013/07/12/europace.eut224.long
Link to the document http://www.cardiogen.aphp.fr
Access
Terms of data access (charter for data provision, format of data, availability delay) Pathology report, authorised sport activity: on reference centre website: www.cardiogen.aphp.fr
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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